Global Healthy Living Foundation (GHLF) Launches Interactive Patient Guide for People Living with Hidradenitis Suppurativa (HS)

MEDIA CONTACT
Susan Jara
Phone: 201-406-7756
Email: sjara@ghlf.org

The Global Healthy Living Foundation (GHLF) announced today the launch of Your Interactive Patient Guide to Hidradenitis Suppurativa (HS), a groundbreaking resource designed to empower individuals living with HS. This innovative guide simplifies the complex journey of managing HS by providing patients with personalized tools and actionable advice to take control of their health.

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh), or HS, is a chronic inflammatory condition characterized by painful, recurring boil-like abscesses. Affecting about 1 percent of people worldwide, including an estimated 3.3 million in the U.S., the true number may be significantly higher due to underdiagnosis. On average, patients live with HS symptoms for nearly 10 years before receiving a correct diagnosis, with 70 percent of individuals diagnosed at moderate-to-severe stages.

“HS can affect anyone, anywhere, at any time,” said Seth Ginsberg, Co-Founder of GHLF. “Misconceptions and delayed diagnoses leave many patients feeling isolated and frustrated. Our goal with this guide is to provide patients with the knowledge, tools, and confidence they need to advocate for themselves and take meaningful steps toward managing their condition.”

Key Features of Your Interactive Patient Guide to HS:

• Learning modules: Understand HS symptoms, treatment options, and self-advocacy strategies.
• Patient perspectives: Real-world advice from people living with HS.
• Interactive tools: Note-taking and checklists to reflect and plan next steps.
• Support resources: Guidance for building support systems, navigating insurance, and workplace/school accommodations.

The guide is tailored to meet the needs of patients, caregivers, and advocates. It was developed in collaboration with health care providers, dermatologists, and patient advocates, including Amit Garg, MD, a leading dermatologist and researcher in HS care, and Brindley Brooks, Founder of HS Connect, a dedicated advocacy group for the HS community. The resource was made possible thanks to support from global biopharmaceutical company UCB.

“We believe that knowledge is power, and this guide gives patients the tools they need to navigate their care and improve their quality of life,” added Ginsberg.

“In addition to our work developing new treatment options for people living with severe immunologic diseases, UCB is deeply committed to expanding support and tools that can help ease the management of diseases like hidradenitis suppurativa,” said Jeff Stark, MD, Head of Medical Immunology, U.S., UCB. “We’re proud to have supported the Global Healthy Living Foundation on this interactive HS patient guide, which was created by the community, for the community to offer tools and information tailored to real patient needs."

Your Interactive Patient Guide to Hidradenitis Suppurativa (HS) is available for free download at http://HSPatientGuide.org.

About Global Healthy Living Foundation

The Global Healthy Living Foundation is a U.S. based, 501(c)(3) nonprofit, international organization whose mission is to improve the quality of life for people with chronic illnesses by advocating for improved access to health care through education, patient-centered clinical research, support, advocacy, and economic and policy research. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the international, digital community for millions of people living with arthritis and their supporters worldwide who seek education, support, activism, and patient-centered research in English, Spanish, and French. In addition to arthritis and autoimmune disorders, GHLF supports dermatology, gastroenterology, neurology, cardiology, oncology, infectious disease, rare disease, and pulmonary patients through a host of different programs and activities which draw more than 700,000 patients a month to GHLF websites and create more than 10 million impressions a month on seven social media platforms. In 2024, GHLF had more than 1 million views and listens with its patient-centered audio-visual content, found on YouTube and podcast platforms. GHLF never asks the public for donations, receiving funding instead through governments, non-governmental organizations, foundations, industry, family foundations, and GHLF Co-Founder Louis Tharp. Visit ghlf.org for more information.

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